SITTING STILL

Dear Persons,

We recently went to my daughter’s middle school concert. To my amazement, my 18-year-old son sat through the entire concert without fidgeting, talking, or calling out unexpectedly to kids onstage. 

It was the first such event I’ve ever attended without breaking into a cold sweat from anxiety over his behavior. That includes, over the years, many, many concerts, movies, plays, musicals and other performances during which attendants are expected to be quiet and attentive. 

I’ve been a mostly solo (my partner, Pardner, is a chef/owner of a restaurant) or entirely single parent for most of my children’s lives. With a couple of notable exceptions, I’ve spent every weekend on my own with them for the past twelve years or so. 

It’s been really hard—and REALLY wonderful. 

Early on, I decided I wanted to be a person and do things, and so I’ve been dragging them along to events all these years. 

I hadn’t realized how much G’s restlessness affected me until the other night. 

There are so many little ways in which life can feel daunting. What we usually do is soldier on, right? 

But it’s amazing to consider all the possibilities that open up when you actually feel free to enjoy an event rather than keep most of your energy on someone sitting next to you. 

Sitting through that concert like that was kind of a big deal. 

And it got me to wondering: How much energy have I wasted on worry over these many years? 

I usually explain and justify my worries to myself as solution-seeking behavior. 

But no amount of anxiety could possibly have hastened G’s development into the amazing young man he is now. 

And, to be honest, my worries probably kept my brain too busy to come up with good work-arounds and ideas. 

Plus, ALL ALONG, G has been the happy, kind, funny, fun, loving person he is now. Just a bit more fidgety. (And, truth be told, he wasn’t always all that into much of the stuff I dragged him to…)

Yet I persisted in worrying much of the time about G’s fidgeting and behavior—and not only insofar as it affected him at the time! I also future-catastrophized about potential impacts on his career and how it  might alienate him from the “regular” social world. 

What good did/does all that worrying do? How many other useless ways do I spend my time anxiously mulling over and anticipating possible disastrophes? 

We all struggle with how to be in society. And knowledge around expectations and societal norms comes slowly to some. So do the sheer physical ability to settle down and key mental capacities, including emotional regulation. 

So why do I torture myself unnecessarily? 

I know I’m not the only parent (or guardian, or loved one) of a child with differences (or parent, period) who does this. 

Frankly, I wasn’t much of a worrier, pre-kids. Somehow the little worries of new parenthood mushroomed over the years—sometimes with good reason—into a constant stream of nervousness. 

Looking back, I wish I could’ve enjoyed myself more as a mom, instead of only now realizing all this. 

I’m going to work on finding a way to avoid breaking into a cold sweat when I go places with my children. 

More to the point, I’m going to take a close look at the ways worry has come to pervade so many areas of my life that it’s often depressing and sometimes even debilitating. 

Because I have a hunch that in all cases there’s a similar element of complete futility.

I’m going to try to be gentle with myself in the process: This worry has developed as a result of a lot of hard stuff. 

But I’m also going to be firm, because I’ve had enough!

Worry is my issue and I’m going to own it. 

I cannot “control” my kids anymore now that they’re teenagers. Nor can I make everything right for them!! In fact, I never could entirely do either. 

I can see now that G has moved on. 

Time for me to do the same.

Love,

Full Spectrum Mama

Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Mommy Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month's Voices of Special Needs Hop? Click here!

You are invited to the Inlinkz link party!

Click here to enter

HOPE

Dear Persons,

Last week, I took my daughter Z on a mother-daughter trip to Emily Dickinson’s home. Since Pardner is a chef, we have lots and lots of time together, but are almost always with her brother, G. The outing — happily anticipated by me —  involved a lot of side eye and bored resignation on Z’s part. Parsing which aspects of her attitude belong to rote teen sullenness, which are characterological, and which are attachment disordered is pretty much impossible, so I will just say that she was not terribly impressed. (She was “sort of ok” with the parts of our “adventure” that involved food…)

We were able to have this delightful alone time because, this spring, G got into a federal college prep program for underprivileged and/or underrepresented teens that provides several residential weeks of classes and other enrichment in the summer. 

I sobbed for days when G got accepted into this program. It’s not that I’ve never had allies. There have been lots of angels along our path (and some less-helpful people as well, to put it mildly…), especially certain teachers and helpers in his schools. But this program is comprehensive, and year-round, and it explicitly aims to get kids into college who might not otherwise go. 

I’ve always seen G — with his amazing ideas and creativity and interesting, interested mind —  as someone who’d have a wonderful, inspiring time in college; but I’ve also known it would be a huge stretch, given his learning differences and our income. I’ve been sad about that pretty much since G’s diagnoses.

For the first time, I felt like  a group of people who could really HELP G also really GOT and SAW him. After so many years struggling to get school staff to follow his IEP, or see him as more than just a label, these people were going to spend hours and days and weeks working with G and other teens to build the exact skills needed to get into and attend college!

The program was also going to help…well…ME. This enterprise of advocating for a child with learning and social and physical differences and challenges can be all-consuming. There have been many, many times when I have felt like other people were talking about a different kid when discussing G — and that they basically had never even met the child I knew…

Knowing that this program was going to help me did two major things: it allowed me to finally admit how much I NEEDED that help, and it gave me HOPE. 

Seriously, dear readers, it was a revelation to me how lonely and afraid  I’d felt in this endeavor — so much so that I couldn’t even acknowledge those feelings until there was something to alleviate them. I mention this because you may be in the same boat and I hope you, too, can find that thing or those things that uplift you and yours.  

In the weeks leading up to his first departure, I was increasingly worried as G failed (as always) to brush his teeth unless supervised or shower unless coerced, evinced literally no executive function whatsoever, and had an end-of-semester 9th grade experience in which both his grades and behavior (at home and school) could have been more than a scootch better.

In his first week at the program, self-regulation issues got the better of him. I was barraged with emails with innocuous yet terrifying headlines like “Update,” and “Checking in.” My Meeting Friend — having endured such periods of uncertainty and fear herself when her child was on tenuous ground in various programs — helped me survive. She gave me hope. 

Together, G and I and the staff of the program came up with strategies (including having no phone whatsoever) to assist G to fully participate. We gave me hope. He’s in the third week of the program and so far says it’s “fun” (his highest compliment). 

And Z? She’s doing her own camp, where she can be surrounded by other sour teens. I am pretty sure she’s having “fun” too!

Figure I - “Lego Construction Representing Unity and Difference” (when G saw I was working on this blog post he made this for me, saying, “Everybody expects Lego stuff to be square and this is not - it’s different. And the black and white together represent unity.”)

(Figure II - “The Usual Square Lego Form”)

It’s a little bit of a vulnerable thing, to allow oneself to hope. There have so far been ups and downs, but I’ll take it. 

I shall leave you with this poem, by a woman many people speculate may have been on the autism spectrum — and who certainly was both extremely “different” and successful in her own ways. 

         “Hope” is the thing with feathers 

         By Emily Dickinson

“Hope” is the thing with feathers -

That perches in the soul -

And sings the tune without the words -

And never stops - at all -

And sweetest - in the Gale - is heard -

And sore must be the storm -

That could abash the little Bird

That kept so many warm -

I’ve heard it in the chillest land -

And on the strangest Sea -

Yet - never - in Extremity,

It asked a crumb - of me.

Love,

Full Spectrum Mama

Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month's Voices of Special Needs Hop? Click here!

An InLinkz Link-up

POSITIVE PARENTING: FUN!

Just a little example of PP from the Full Spectrums:

Pardner used to be a dawg. Not literally, but – let’s just say he spent his twenties, most of his thirties (there was that...brief first marriage), his forties...even the first part of his fifties, as a single, hunky, zest-for-life-filled, man-about-town chef who had a great appreciation for female beauty of all sorts.

And I do mean all.

When we first started dating, I asked him this highly original question: “What is the most important quality you value in a woman?”

“Fun,” was his simple answer.

Well, I felt very superior when he said that. How trite, I thought. How superficial! And how hard can it be to have fun with no kids, a thriving/rewarding/creative business, excellent health, and that special freedom of the non-married to extricate oneself from any less-fun relationship? A person who thinks fun is the most important thing must be pretty durn trifling, no?

Then I got to thinking about it. Here I was, newly-divorced and unemployed as yet, with two young high-needs kids (neither had labels yet, but the high-needs part was Not Subtle). I was shattered, really, at the time. And yet there he was...into me in a big and, to him, very new way.

Maybe he meant something different by “fun” than I thought.

As we got to know each other, I began to see how fun actually encompasses everything I truly value in life. It dawned on me that a most precious sort of fun was our finding a way to laugh together while courting despite my being in precarious mental, physical and fiscal health.

Fun isn’t just everything always being easy, lighthearted, and effortlessly sparkly all the time; sometimes fun is finding the sparkle in the (heavyhearted, hard, crusty, messy) mud, my friends. It’s choosing to giggle when you get to that giggle/sob crossroad (or at least to gigglesob). As well, fun is exercising our innate capacity to recognize and appreciate that sparkle, that giggle...

Now, we Full Spectrums hold FUN as our High and Sacred Family Virtue. Fun is finding a way to ENJOY each other’s company – even just for a few minutes, even after a crapola day.  Fun is being GRATEFUL for the kids you have and the family you make, whoever and however they are.

Yeah, this isn’t easy all the time; heck, it’s not even happening most of the time. But when it is? That’s fun. Thanks, Pardner!

Positive parentingly,

Love,

Full Spectrum Mama

#Positiveparentingday is the brainchild of the Introverted Matriarch. <3

Summer, Summer, Summer Time

Having, now, about two hours of the school year left and counting, I went tooling around the internet and found this post: http://lostandtired.com/2013/06/19/insane-in-the-membrane/ , and got “Insane in the Membrane” (a life-mantra, if you will, for the Full Spectrum Family and Friends) stuck in my head for the gazillionth time and, so here, Daddy lostandtired, …Gotcha back? Hope so.

 

Summer, Summer, Summer Tiiime…Time to Sit Back and Unwind

Remember this Jazzy Jeff and the Fresh Prince song?

I’ve been humming it incessantly. Because that’s what we are going to do this summer?

Yup, I am determined to show my guys the FUNNEST, most wholesome, refreshing, unwindingest summer EVER.

And so I am sure there won’t be a THING to write about.

Plus, it seems I will be busily frolicking with Z and G  24/7  all summer, except for two weeks of camp, during which I will be, naturally, sailing the Mediterranean and getting my spa on. *

Indeed, we’ll be sleeping late,* eating a wide range of ONLY healthy foods while having no stomach issues,* and taking luxurious* road trips with the whole family enjoying brain- and character-building activities,* bicker-free, of course.*

I’ll certainly be musing about ongoing topics from past concerns such as:

how “disability” can be a super useful term (a.k.a. “I’ll call you whatever you want, whenever you want,” hmm…maybe that’s the post right there?);

diarrhea (Do we still have it? Bet you’re on the edge of your seat!);

Shifting Gears parts II, III and onward;

whether bringing up the existence of Finding Fairies (http://fullspectrummama.blogspot.com/2013/05/the-finding-fairies.html) might actually have been Z’s way to give me back my necklace (i.e. whether the whole scenario was not in fact actually my brilliant idea…);

and, relatedly, about who, actually, is in charge around here anyway?

Merry summer to you, dear readers,

Love,

Full Spectrum Mama

* In my dreams.

The Finding Fairies

I dedicate this post to my Gram, Merlin Lorene Cunningham Shaffer, 10/20/17-5/22/13. The giant rocks on her tiny fingers from her adoring husband were the LEAST spectacular thing about her. Love you, Gram.

Z has a history of jewelry…interest.

So, when my favorite talismanic rhinestone necklace disappeared, I had a pretty good idea of the perp. I also knew it would do exactly zero good to question said individual. Like, have you ever tried to convince a narcissist of something that doesn’t fit their view of reality? Or tried to get your Tupperware back from – oh, wait, you don’t know her…

Z is the most convincing person you may ever meet. Unless I have 100% conviction to back me up, I don’t even broach any marginal subjects.

In fact, I almost took her to have her hearing checked out because girlfriend is so convincing she doesn’t even hear you if she isn’t tryna hear what you are saying. Over the course of several days her ignoring me and then saying, casually, “Oh, sorry’ [but being, definitely, not sorry] happened so frequently that I became concerned. Schedule a hearing test? Sure, until I realized she was testing me. Cheeky.

Had I asked her about my necklace, the conversation would have gone like so:

“Say, Z, you haven’t seen my special blue sparkly necklace have you”

Wide-eyed: “No.”

[Possibility that cat has batted necklace behind shelf enters mind of mother.] “Okay.” [Result: Daughter knows Mother is not omniscient.]

For contrast, let’s examine an interaction wherein FSM knows the facts with certainty:

The setting is the walk home from school last Friday.

Z announces, nonchalantly, “Mama, Mrs. S said we should tell our parents we are supposed to go to pizza night tonight.”

“Oh, really?” I query, knowing that the event in question is entirely optional – and geared toward the upper elementary classes. “Should I speak with Mrs. S about that?”

“Well, she didn’t really say…I’m not sure what she said, exactly.”

“Did she say you should go to pizza night?”

“…No.”

Did she feel like she was telling the truth when she told me what her teacher said? No. Z admitted she hadn’t been thinking about that (truth), just wanting pizza.

We don’t want our families to live in a climate of suspicion. This is a struggle when a family member has an attachment disorder! I do want to show Z, though, that lying is something that will be discovered and is not an effective means of communication. So, in this sort of context (grey areas of truth) I only want to ask her questions to which I basically know the answers. I don’t want to teach her that she can successfully fool her mother and take things with impunity. 

Also, gimme back my necklace!

Ahem.

Not only was this necklace Most Spectacular, it had been given to me by Swan Ayi to remind me of her friendship during a thorny time. I’d clutched that necklace through a series of “Clutch Pearls!” moments, trust me.

                                            Figure I – Most Spectacular Necklace (circled)

I searched far and wide. I can find anything at any time. Because my house is soooo clean. Not.

It is tiny, though, so there’s not that many places to look.

One day my precious necklace suddenly appeared on my (locked) closet floor, where it had decidedly not been before – and precisely where it might have been slipped under the door by small fingers. 

But, meanwhile, we’d begun a conversation about the existence of “Finding Fairies.” Z’s eleven-year-old brother contends that, “fairies aren’t real, except the tooth fairy,” but we gals felt pretty confident about these FFs.

I decided to do a little experiment.

Z wrote a note to the FFs about my necklace and how it had disappeared. We put it by her bed with some little gifts – flowers, sparkles, etc. The very next morning, there the necklace was!

What does this all mean? Like some other Z/truth conundra, this feels like a grey area I am unqualified to elucidate.

The whole thing, though, did feel a wee bit…fun.

Confrontation avoidance? For once not feeling obliged to Lecture? Something about magic and second chances?

Love,

Full Spectrum Mama